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Communicating Your Needs

When you’re chronically ill, your life changes dramatically. You find yourself canceling plans often, needing to rest when others can keep going, or sometimes, leaving early when you are able to go out. It’s a challenging thing to adjust to. You lose a lot of freedom, and that can be really hard to accept. Another challenging thing is then explaining to others why your life has changed and what they need to do to be accommodating and understanding. Whether it’s friend, family member, or partner, we find ourselves having those conversations often.

Not good enough

A big reason I’ve had trouble communicating my needs is from simply not feeling good enough. It’s easy to feel less than when you can’t do things other people can. Sometimes, I’ll feel guilty if I miss out on plans not only because I’m missing out on memories, but because I worry people will think I’m not trying hard enough or don’t care enough. In reality, our bodies are just constantly tearing things we care about away from us, and that can be hard to express. So, how do we express to others how our lives have changed, without feeling like it’s our fault? We start by looking at everything we provide to these relationships, the things that make us who we are, and those things do not include our disease. We count our worth by everything we CAN do. By talking to those around us about our needs, while also knowing that we are worth them taking the time to listen and understand, we can learn to open up about how our illnesses impacts our lives.

Important conversations

Expressing your needs can be about many different things. Therefore, there can be many different times you need to talk about them. Sometimes, it’s a small talk about how you can’t go places that don’t have a place to sit, because standing too long will cause you pain. Other times, it can be a larger conversation about how someone thought you felt fine because “you don’t look sick“, and you have to explain to them what an invisible illness is, and why things like that can be hurtful.

Here are a few examples of conversations that can be important:

Talking about your sex life with a romantic partner by being honest about what creates pain and what they can do to be helpful and make things more comfortable

Talking to family members about the possibility that you might miss out on family events by explaining to them why that is and how they can respond to you when you do

Talking to your boss about how they can accommodate you so you can get work done while also being able to manage your pain if you’re having a flare, such as taking a few short breaks or sitting instead of standing while working

Speaking your truth

No matter the subject, without these conversations, we would be miserable in any relationship we have. The more times I’ve had them, the easier it becomes, especially with new people in my life. Allowing yourself to be completely honest about the different ways endometriosis can change your life can also feel really freeing. Everyone knows how stressful it is to keep things bottled up and when you’re sick, it’s almost natural for us to do that. We are constantly downplaying how we feel to other people. We put on clothes and makeup, go about our day with a smile, while in a tremendous amount of pain, and say we’re doing okay.

It is exhausting to live with an illness no one can see, and one that can be so challenging to express. By practicing communicating with the people in your life, we can help make our lives a little bit easier, and hopefully, in the long run, a little bit healthier too.

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